In January 2023, The Courier’s Noreen Boehm brought readers the story of eleven-year-old Liam Hobden and his brave fight against Friedreich’s Ataxia.
Liam has been diagnosed with the genetic disease Friedreich’s Ataxia, which is a relatively rare disease of the nervous system characterised by the gradual deterioration of nerve cells (neurones) in the spinal cord and brain causing loss of coordination.
Other symptoms include loss of balance, walking abnormalities, speech difficulties, swallowing problems, increased risk of respiratory infections, numbness, scoliosis, fatigue, and two out of three people will have associated heart problems called cardiomyopathy and unfortunately Liam is one of those people who has cardiomyopathy.
Friedreich’s Ataxia is inherited in an autosomal recessive pattern, meaning both parents have one altered gene, but don’t exhibit any symptoms themselves, since they have a second healthy copy.
There is no cure, but some of the symptoms can be managed with medication, surgery and physical therapy.
After a massive fundraising effort by his family and the Boggabri community, Liam and his mum Stacie visited Thailand for four weeks of intensive treatment that is not available in Australia.
While Stacie and Liam were in Thailand, Liam’s dad Luke and older sister Ella, and younger brothers Lokie and Harley remained at home.
During the four weeks, Liam underwent 22 days of treatment consisting of 57 therapies, five lumbar injections of stem-cells, five IV fluids, three stem-cell packs via IV, and a massive 160 million stem-cells, occupational therapy, physiotherapy, and transcranial magnetic stimulation.
Stacie reported that on August 2, Liam underwent transcranial magnetic stimulation, hyperbaric oxygen therapy and acupuncture.
“I was in absolute shock as he had been relying on his walker or walls or was crawling to get where he wanted to go, but Liam stood up himself, out of the wheelchair, unaided and walked to the nearest wall,” she said.
On August 4 the report was that yesterday was a very tough day. The preparation for the stem-cell treatment consisted of sleep medicine, blood tests and IV fluids.
Liam ready for the next treatment.
Stacie said, “all was going well until I had to tell Liam that I was unable to go with him into theatre. He became very emotional and scared as this was his first surgery.”
“But we managed to get through, Liam is such an amazing little boy with so much fight in him.”
A highlight at this time was an email from Liam’s school in Boggabri which put a big smile on his face. The program was carried out over six days per week and Liam and Stacie were able to have Sundays off. Both have said how wonderful and caring the medical and nursing staff were to Liam.
Stacie said they have noticed improvement and changes. She feels that Liam has gained more strength and balance, he is not as tired as he was and he has a much bigger appetite.
Unfortunately, he has not been able to get back to school full time, he had three days last week, but is enjoying being back home even if he is getting into trouble from his mum because he tries to do too much too soon and his little body is still building.
After all the treatment, Liam and Stacie were able to have a few days relaxing and playing tourists.
When asked what he did, Liam said “we went to the beach, I went in a speed boat over to an island, went on a jet ski, best of all had a go at para-sailing.”
“I loved the para-sailing, especially when we went up and over the waves.”
Stacie said, “I didn’t think he would have a go but he did and thoroughly enjoyed it.”
“I have to say how beautiful the people are over there. When we went on the boat, because we couldn’t take the wheelchair, I had to carry him but everyone was offering to carry him and then when we were over at the island everyone was so beautiful and helpful.”
“The day we went to look at a temple, the people there came over to him and spoke to him and offered him flowers to hold, told him how to pray, it was very emotional, so emotional and beautiful, that I was in tears,” she said.
Liam became upset when he had to say goodbye to his nurses, he had formed such an amazing bond with them and they were so very kind to him.
The Hobden family would like to pass on their sincere thanks for the love, emotional, physical and financial support that they have received over the past months, they are overwhelmed by the generosity.
Moving forward, Stacie said, “we can go back for more treatment after 12 months, there is no limit of stem-cell treatments but we have to wait and see how things go and of course it will also depend on costs again but we are pleased to be home with the family, back to school and I’m back to work tomorrow.”
Read previous stories about Liam’s journey here:
Liam Hobden fights Friedrich’s Ataxia – The Courier (courier.local.tiemens.com.au)
Fundraiser for Liam | PHOTOS – The Courier (courier.local.tiemens.com.au)
Owen Rixon loses his locks to help classmate Liam – The Courier (courier.local.tiemens.com.au)
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